It's been just over two months since Kit has been out of the hospital. It's awesome having him at Adam's place as he is so close and we know that Adam has an eye on him. It's been getting better slowly. This is probably the longest time that Kit has been on his meds regularly and we see a big difference. He is still mostly hanging out alone in his room, watching movies and playing the odd video game, but with this past week of great weather he has been found outside with his apartment mate having a beer. We bought him a bike last week as a belated Christmas present and he has biked up for dinner and to have lunch with us a work a few times. So that's great! I think he is more chatty and happier. Unfortunately - Kit says he feels no better. Still hears voice all the time and says he generally just feels awful. I hope this is just the part of him who doesn't want to admit he feels better cuz he's a stubborn 22 year old. I hope that he really does feel a bit better...
The last two time we have visited Dr. Lewis we have bumped into a another young man with what I think has the same sort of diagnosis... some sort of psychosis anyhow. He is totally different from Kit - outgoing, talking to everyone, big smile and seems so happy. Last week he attempted to 'hypnotize' Kit into being happy. It was funny and made Kit laugh! I'm hoping that they can connect and share with each other and maybe learn from each other. For sure it's great for Kit to make some friends...
So Dave & I are doing pretty well - it's slow and steady right now and we just love him being on the injectable meds as it's only once a month. Tuesday he gets his next shot - a higher dose - hopefully to shut out those voices, but there is always the worry that he will have some side affects that because it is a long acting injection - have to be treated with other meds since you can't take this one out of his system. We will cross our fingers and deal with it as we need to. It's just so awesome that he is taking the shots... Because we don't have to think about him taking his meds everyday we can just forget about the illness between doctors visits and it's much easier to treat him normally. Which makes our relationship so much better.
Anyhow - this wasn't a very exciting blog - but for those of you wondering how things are going - you now know!!
Friday, March 23, 2012
Thursday, February 2, 2012
Patience
Patience isn't something I have a lot of. I think it must have been my mother who said to me over and over... Patience is a virtue, possess it if you can; it's seldom found in women and never found in man. So a lack of patience goes way back for me.
Dealing with mental illness demands a lot of patience. I can't fix it, control it, do anything about it. It just is. If my kid had cancer I'd be able to find the best doctor, have the surgery, radiation, chemo, whatever it takes and from the start you know pretty much what the potential outcomes might be. Cured, not cured, maybe it will come back. But it's measurable and you can take action right away. A young man I know was diagnosed with lymphoma and once the family knew what they were dealing with - and this happened relatively quickly, they could start treatment. Fast. The doctors knew exactly how to treat it. They'd seen it before, Chemo, radiation and now he's doing great and hopefully will remain cancer free forever. I know not every story is like that - and that he is a fortunate young man to have gone through it so well, but for those that don't you still at least know what it is and what's causing it and you can understand the underlying physiology of the disease. When a psychiatrist sees someone with schizophrenia - they can't just say oh - take this anti-psychotic, have a brain biopsy and we'll know what to do. They just don't know what will work. There is no treatment for schizophrenia - just for psychosis, but there's a lot more to SZ than just the psychosis.
We were at the hospital today having our weekly visit with Dr. Lewis. For the second time in three years he was actually on time. No hour wait or anything. Kit went in and I was knitting. Another mom came over and commented on my knitting and we started gently talking about mental illness. She asked - is Dr. Lewis a good doctor? I said I hope so!! Actually we are pretty sure he is as so many other doctors and mental health care professionals have spoken highly of him, but of course we don't know anyone else who has been to him. Not something people talk about!! Not like you go to a cocktail party and ask anyone if they know a great psychiatrist. Although you might ask around for a great orthopedic surgeon for your knee surgery!
When I went in at the end of Kit's visit to give my input into how he's doing this week I mentioned to him that Kit spends most of his time in bed. He was surprised - I guess Kit told him he's not doing much - but he is really not doing anything. For the past couple of visits Dr. Lewis has been encouraging Kit to try Lithium to see if it will help his depressive symptoms. Each time Kit says no - he doesn't believe in any of the meds, blah, blah blah... same old story. And inside I'm screaming - Just try it!!! Try anything! Try to beat this stupid disease, don't just sit there all day!!! Ah - no patience... I want it to work RIGHT NOW. But today Dr. Lewis told me Kit has decided to try the Lithium. Wow. He had the patience to just keep giving him the idea each week, telling him that it might help, and let him come to the decision on his own time. I could learn something here...
Driving back from the appointment we stopped for a coffee - I was bursting inside with happiness that he is willing to try the lithium. I hope it gives him some good feelings back, some desire to do more than hang in bed all day. But maybe it won't. Tomorrow morning he goes for some baseline blood work so that they can monitor the side affects of the lithium before he starts tomorrow night. Then I'll need to be patient and see what happens.
Dealing with mental illness demands a lot of patience. I can't fix it, control it, do anything about it. It just is. If my kid had cancer I'd be able to find the best doctor, have the surgery, radiation, chemo, whatever it takes and from the start you know pretty much what the potential outcomes might be. Cured, not cured, maybe it will come back. But it's measurable and you can take action right away. A young man I know was diagnosed with lymphoma and once the family knew what they were dealing with - and this happened relatively quickly, they could start treatment. Fast. The doctors knew exactly how to treat it. They'd seen it before, Chemo, radiation and now he's doing great and hopefully will remain cancer free forever. I know not every story is like that - and that he is a fortunate young man to have gone through it so well, but for those that don't you still at least know what it is and what's causing it and you can understand the underlying physiology of the disease. When a psychiatrist sees someone with schizophrenia - they can't just say oh - take this anti-psychotic, have a brain biopsy and we'll know what to do. They just don't know what will work. There is no treatment for schizophrenia - just for psychosis, but there's a lot more to SZ than just the psychosis.
We were at the hospital today having our weekly visit with Dr. Lewis. For the second time in three years he was actually on time. No hour wait or anything. Kit went in and I was knitting. Another mom came over and commented on my knitting and we started gently talking about mental illness. She asked - is Dr. Lewis a good doctor? I said I hope so!! Actually we are pretty sure he is as so many other doctors and mental health care professionals have spoken highly of him, but of course we don't know anyone else who has been to him. Not something people talk about!! Not like you go to a cocktail party and ask anyone if they know a great psychiatrist. Although you might ask around for a great orthopedic surgeon for your knee surgery!
When I went in at the end of Kit's visit to give my input into how he's doing this week I mentioned to him that Kit spends most of his time in bed. He was surprised - I guess Kit told him he's not doing much - but he is really not doing anything. For the past couple of visits Dr. Lewis has been encouraging Kit to try Lithium to see if it will help his depressive symptoms. Each time Kit says no - he doesn't believe in any of the meds, blah, blah blah... same old story. And inside I'm screaming - Just try it!!! Try anything! Try to beat this stupid disease, don't just sit there all day!!! Ah - no patience... I want it to work RIGHT NOW. But today Dr. Lewis told me Kit has decided to try the Lithium. Wow. He had the patience to just keep giving him the idea each week, telling him that it might help, and let him come to the decision on his own time. I could learn something here...
Driving back from the appointment we stopped for a coffee - I was bursting inside with happiness that he is willing to try the lithium. I hope it gives him some good feelings back, some desire to do more than hang in bed all day. But maybe it won't. Tomorrow morning he goes for some baseline blood work so that they can monitor the side affects of the lithium before he starts tomorrow night. Then I'll need to be patient and see what happens.
Wednesday, February 1, 2012
Independence
Well things are kind of quiet right now. Kit is still living in Adam's basement and hopefully that will last quite a while. This past week Kit and I have spent some time in the Ontario Works and ODSP (Ontario Disability Support Plan) offices. Kit applied for ODSP back in September but it takes a long time. More than six months evidently. In the meantime Kit has been getting a 'street allowance' which Ontario Works now calls a 'basic needs allowance' which is $227 a month. Now that he has accommodation he has applied for a rent allowance and was approved in four days. Very efficient. Ontario Works will now pay most of his rent directly to Adam and Kit will still get his basic needs cheque which will be closer to $200. Not bad considering we help him out if needed. Then when his ODSP kicks in he'll get more for each expense.
I have never been to the Ontario Work office. We arrived last Monday at about 11:15 and there were only about three people there. They looked like scruffy guys you'd see on the street, and like us were waiting for an appointment with their worker. We were told that Kit's was out for lunch and to come back at 1:30. Long lunch! Lucky city workers! So we went out for lunch to Il Fornello across from Metro Hall and enjoyed a delicious bite to eat and returned for 1:30. There were a few more people there and by the time 2:00 rolled around it was packed. Anyone who doesn't have their welfare cheques mailed directly comes to pick up the cheques at 2:00. A security guard appeared and all the customers (90% men) were chatting with each other as if this is a monthly get together. It was quite interesting listening to them catch up on their activities for the past weeks and their struggles with finding work and difficulties with their families. Some stories were quite funny and others weren't so happy. One young man walked in - looking very well kept - could have been working there, but wasn't. He asked for his cheque and they told him he had the wrong day and he totally blew up swearing at the people behind the glass, and saying he was sick of being picked on as everyone else could get their money but him. He was sick of the conspiracy against him. Of course I have no right to diagnose, but he did sound quite like Kit at his worst. I felt so sorry for him since he was so sure that he was told to come that day, and he felt like everyone was against him. He said he promised he wouldn't be spending the money on meth like everyone else - so just give it to him. The ladies behind the glass handled him so well, very kind, gentle and respectful despite his aggressiveness. The security guard was called and the young man was removed. Hopefully his cheque was available the next day. And this happens every day. All these people, out of work, maybe mentally, physically or emotionally ill, living off of $227 a month. I can go through that in a few days without thinking about it... How to stretch that out for one month must be a struggle. No wonder so many work under the table - who would admit to earning another couple of hundred dollars if you were to lose that?
As for Kit - he continues to hear voices all the time, and to believe we aren't really real people. He can't work yet as he is too distracted and the meds are still making him so tired and lethargic. He spends most of the day sleeping with occasional breaks to go out and have a cigarette. He is learning some cooking skills and has been barbequeing most of his dinners. Had a great steak dinner with Adam the other night!
Thanks everyone for your support through all of this! It means the world to me!
Monday, January 16, 2012
Stigma
Part of the reason I'm writing this blog is to share our knowledge of mental illness with our friends and anyone who wants to read this... The more educated the public becomes, the less stigma there is. Stigma refers to negative attitudes or beliefs that are held about people who are perceived as different.
People who have been diagnosed with a mental illness are all likely to experience stigma. Public attitudes and beliefs which are often based on fear and misunderstanding, stereotype individuals with mental illness, exposing them to prejudice and discrimination. Stigma infects every issue surrounding mental illness, often with worse consequences than the illness itself. Many people who suffer from mental health conditions won't seek help because of the stigma. In 2001, the World Health Organization declared stigma to be the 'single most important barrier to overcome in the community"
Stigma and discrimination are different. Stigma is the beliefs, discrimination the actions. There is no legal action against stigma, only discrimination. There is also self-stigma where one feels self-loathing or embarrassment as a result of their differences, often because of the negative perceptions around them.
I know when we first found out that Kit had schizophrenia we were totally shocked and scared. I had no knowledge of mental illness at all. Even having completed 3/4 of a nursing diploma - I never learned very much about it. I thought maybe it was like the book Sybil with the girl who has multiple personalities. I thought it meant aggression, and something not treatable. But after poring over information given to us by the hospital and the Ontario Schizophrenia Society we began to learn more. I think what really made us understand was spending time at the hospital with other patients. You know they all have an illness, with some it's more obvious than others, and some people you just can't figure out what brings them to the hospital. They seem mentally and physically healthy. Mental illness presents in many forms and every patient is different. Now when I see someone on the street I try to understand that they are just struggling with something like Kit. They are somebody's son or brother, sister or mother. It is so hard to support someone with mental illness who isn't ready to help themselves, so many people end up having a rough life.
Kit has been out of the hospital now for eleven days. He is living in his brother's two bedroom basement apartment with another guy. He is really happy to have his own space and some independence. Adam and his girlfriend live upstairs. We were away on holiday when he was discharged so Adam thankfully took him in and set him up. Kit wanted to leave the hospital, and although he still believes he is in a virtual reality and nothing is really real, he is not at risk of harming himself or others so he gets discharged. Our stipulation is that he stay on injectable medication so that we know he is taking it and we don't have to be the pill police. He HATES the needles. They are big, the volume of medicine is large and it really hurts. Besides that he has to go up to the psych ward with the nurse, go to a special room, drop his pants and get a needle in the butt. How humiliating. He told us last week that he thinks the needle will kill him - hit an artery or something. And he still believes it's just 'virtual' medicine. So why would he want to take it? And he has self-stigma. He said he doesn't want to be the one with schizophrenia for the rest of his life. (at least that was a spark of recognition that he has an illness - but still sad.)
Good news that I have a friend who told me about another drug similar to what he is taking that can be taken in the ARM!!! Smaller needle and less volume. Now why didn't the hospital suggest this? When he has repeatedly said how much he hates the needle in the butt? Why don't they try to work with him?? Isn't it the most important thing to keep him on his meds? ARGHH! Anyways - I faxed the info to his doc today and hopefully tomorrow he will get the shot in the arm. And hopefully it's much less painful. I'll let you know...
If you have any questions - please don't hesitate to ask!
People who have been diagnosed with a mental illness are all likely to experience stigma. Public attitudes and beliefs which are often based on fear and misunderstanding, stereotype individuals with mental illness, exposing them to prejudice and discrimination. Stigma infects every issue surrounding mental illness, often with worse consequences than the illness itself. Many people who suffer from mental health conditions won't seek help because of the stigma. In 2001, the World Health Organization declared stigma to be the 'single most important barrier to overcome in the community"
Stigma and discrimination are different. Stigma is the beliefs, discrimination the actions. There is no legal action against stigma, only discrimination. There is also self-stigma where one feels self-loathing or embarrassment as a result of their differences, often because of the negative perceptions around them.
I know when we first found out that Kit had schizophrenia we were totally shocked and scared. I had no knowledge of mental illness at all. Even having completed 3/4 of a nursing diploma - I never learned very much about it. I thought maybe it was like the book Sybil with the girl who has multiple personalities. I thought it meant aggression, and something not treatable. But after poring over information given to us by the hospital and the Ontario Schizophrenia Society we began to learn more. I think what really made us understand was spending time at the hospital with other patients. You know they all have an illness, with some it's more obvious than others, and some people you just can't figure out what brings them to the hospital. They seem mentally and physically healthy. Mental illness presents in many forms and every patient is different. Now when I see someone on the street I try to understand that they are just struggling with something like Kit. They are somebody's son or brother, sister or mother. It is so hard to support someone with mental illness who isn't ready to help themselves, so many people end up having a rough life.
Kit has been out of the hospital now for eleven days. He is living in his brother's two bedroom basement apartment with another guy. He is really happy to have his own space and some independence. Adam and his girlfriend live upstairs. We were away on holiday when he was discharged so Adam thankfully took him in and set him up. Kit wanted to leave the hospital, and although he still believes he is in a virtual reality and nothing is really real, he is not at risk of harming himself or others so he gets discharged. Our stipulation is that he stay on injectable medication so that we know he is taking it and we don't have to be the pill police. He HATES the needles. They are big, the volume of medicine is large and it really hurts. Besides that he has to go up to the psych ward with the nurse, go to a special room, drop his pants and get a needle in the butt. How humiliating. He told us last week that he thinks the needle will kill him - hit an artery or something. And he still believes it's just 'virtual' medicine. So why would he want to take it? And he has self-stigma. He said he doesn't want to be the one with schizophrenia for the rest of his life. (at least that was a spark of recognition that he has an illness - but still sad.)
Good news that I have a friend who told me about another drug similar to what he is taking that can be taken in the ARM!!! Smaller needle and less volume. Now why didn't the hospital suggest this? When he has repeatedly said how much he hates the needle in the butt? Why don't they try to work with him?? Isn't it the most important thing to keep him on his meds? ARGHH! Anyways - I faxed the info to his doc today and hopefully tomorrow he will get the shot in the arm. And hopefully it's much less painful. I'll let you know...
If you have any questions - please don't hesitate to ask!
Friday, December 30, 2011
Day 28
Today we had our second 'family meeting' with the doctor. This was our second meeting with a psychiatrist since Kit has been in the hospital. And it was a new doctor. The past resident is finished his rotation and this doctor is a fellow covering over Christmas break. Really nice guy - Dr. Kumar. Spent almost two hours with us. He asked us for the whole history - back to high school and right up to now. Very thorough. We really liked him. Kit was still in bed when we got there and he didn't join us. Most of the talk was about meds... he has had some significant improvement since being on them - but it has not changed his false beliefs about the controller. He still thinks he is totally controlled by someone/thing else. He is on rispiridal - a newer antipsychotic both orally and by depot injection. Because he is on the injectables it takes a little longer to take effect so we need to keep waiting. The doctor is trying to find out how much of the psychosis is caused by street drugs - cannabis - and how much is the underlying illness.
Much of the discussion was also about the plan for the future. Kit basically has three choices when his form is up
1) live in Adam's basement with a support team - case worker, psychiatrist, inject-able meds, go on ODSP and/or get a job.
2) transfer to another facility like Ontario Shores for some more intense rehab. They have a great program called STEP which is for young schizophrenics to learn about and deal with their illness.
3) back to the shelter system.
We would like #2 or #1, but Kit would prefer #3. So frustrating. Who spends 28 days in the hospital to be released to the street? What a waste... We just have to hope that the next 15 days show Kit some insight into his disease.
The doctor told us there are some good things - one being that Kit was highly functioning before he got sick. Was in university, did well in high school and the second being that the first psychosis may have been triggered by street drugs. (and possibly the following ones). What is going poorly for him is the lack of insight - that he doesn't see his belief system as being wrong. Also the lack of compliance with his meds.
We celebrated our Skelly family dinner tonight with Adam & Alison, Liz & Al, Britt, Molly, Brendan and Eddie and Emma came over as well. It was awesome to have everyone together tonight with Kit and know that he has people who love him and will be there for him. Even though at this point Kit can't really see how important these relationships are to him - they are what will make the difference for him. It really was so great to see Bren, Eddie and Kit together. I hope Kit goes to sleep tonight thinking about this long term friendship that you have all had for so long. Darn - I wish I had gotten a picture of the three of them together...
Much of the discussion was also about the plan for the future. Kit basically has three choices when his form is up
1) live in Adam's basement with a support team - case worker, psychiatrist, inject-able meds, go on ODSP and/or get a job.
2) transfer to another facility like Ontario Shores for some more intense rehab. They have a great program called STEP which is for young schizophrenics to learn about and deal with their illness.
3) back to the shelter system.
We would like #2 or #1, but Kit would prefer #3. So frustrating. Who spends 28 days in the hospital to be released to the street? What a waste... We just have to hope that the next 15 days show Kit some insight into his disease.
The doctor told us there are some good things - one being that Kit was highly functioning before he got sick. Was in university, did well in high school and the second being that the first psychosis may have been triggered by street drugs. (and possibly the following ones). What is going poorly for him is the lack of insight - that he doesn't see his belief system as being wrong. Also the lack of compliance with his meds.
We celebrated our Skelly family dinner tonight with Adam & Alison, Liz & Al, Britt, Molly, Brendan and Eddie and Emma came over as well. It was awesome to have everyone together tonight with Kit and know that he has people who love him and will be there for him. Even though at this point Kit can't really see how important these relationships are to him - they are what will make the difference for him. It really was so great to see Bren, Eddie and Kit together. I hope Kit goes to sleep tonight thinking about this long term friendship that you have all had for so long. Darn - I wish I had gotten a picture of the three of them together...
Tuesday, December 20, 2011
Schizophrenia...
Wow!!! I just saw that 173 people have looked at my blog! I'm totally shocked. So I thought if that many people are checking it out - think about all those people who can learn from it. My story doesn't really tell much about schizophrenia - just what has happened to us. So for those who are interested here's some info...
Schizophrenia is a disturbance of the brain's functioning. It can seriously disturb the way people think, feel and relate to others. About one person in 100 develops this disease, and men and women are affected equally however men usually have their first onset of psychosis in their late teens early 20's, while woman usually experience it a few years later. The onset can be so gradual that a family doesn't notice for a long time, or the onset can be rapid. In our case it was the former - when we look back we can see changes that were occurring while Kit was in high school, but we attributed them to adolescence and the typical changes that might happen at that time in his life. People with schizophrenia also often suffer from drug addictions as well - often to help self medicate and treat their symptoms.
There are three stages of schizophrenia. Prodomal, active and residual. In the first stage - the beginning people may lose interest in their normal activities and pull away from friends and family. They can be easily confused, have trouble concentrating and prefer to spend their time alone. Many become obsessed with religion or philosophy. This stage can last weeks, months, years. For us it probably started in grade 9 and lasted till 2nd year University when it became a crisis. The second stage is the active stage. The person may have delusions, hallucinations (either visual or auditory) and have a marked distortion in the way they think. This is the most frightful time for both the person suffering from schizophrenia and their family. The last stage the person will be listless and withdrawn and have trouble concentrating. It can present similar to the first stage. The stages may recur over and over in a persons life.
When people talk about schizophrenia there are two types of symptoms. Positive and negative. In this case it means what the disease adds and takes away. For example some positive symptoms would be: delusions (false beliefs) hallucinations (could hear, see, taste , smell or feel something that isn't there) disorganized thoughts, moods and behaviors. The negative symptoms would be: slowing of physical activity, reduced motivation, loss of interest in the feelings and lives of those around them, lack of concern for personal appearance. So the positive symptoms are the symptoms we see and are scared of and the negative symptoms are the ones we don't always see but are equally distressing.
There is no single cause for schizophrenia. There is definitely a genetic link, but they haven't determined exactly how that fits. There are things that can trigger psychosis - extreme stress and marijuana to name a couple. They have found that their is a much higher level of dopamine in a person's brain who has schizophrenia.
Treatment is usually done in a hospital as an in patient or an out-patient. Treatment usually consists of anti-psychotic drugs and psycho-social interventions. The anti-psychotic drugs help to control the amount of dopamine in the brain - but dopamine is the neurotransmitter responsible for our feeling good, so take it away and you don't feel so great any more. All of the anti-psychotic drugs have awful side affects. It's a matter of find the one that works with each person and the right balance to take away the positive symptoms without making the negative ones worse. All done by trial and error. While one drug may work well for one person - it may not work at all on another. One person may have terrible side-affects from one drug and another may not. It's totally hit and miss. And frustrating!
One book I have read said that 30% of people diagnosed with schizophrenia do very well - live relatively normal lives, have a job, relationships etc. Another 30% don't do so well - they may be able to live on their own, supported by disability or welfare and another 30% are those we see on the street. The last 10% commit suicide. At the beginning we were very hopeful that Kit would be in the top 30%. Now we are hoping for that but reality looks like it may be the second 30%. And that's okay. It beats the rest!
Schizophrenia is a disturbance of the brain's functioning. It can seriously disturb the way people think, feel and relate to others. About one person in 100 develops this disease, and men and women are affected equally however men usually have their first onset of psychosis in their late teens early 20's, while woman usually experience it a few years later. The onset can be so gradual that a family doesn't notice for a long time, or the onset can be rapid. In our case it was the former - when we look back we can see changes that were occurring while Kit was in high school, but we attributed them to adolescence and the typical changes that might happen at that time in his life. People with schizophrenia also often suffer from drug addictions as well - often to help self medicate and treat their symptoms.
There are three stages of schizophrenia. Prodomal, active and residual. In the first stage - the beginning people may lose interest in their normal activities and pull away from friends and family. They can be easily confused, have trouble concentrating and prefer to spend their time alone. Many become obsessed with religion or philosophy. This stage can last weeks, months, years. For us it probably started in grade 9 and lasted till 2nd year University when it became a crisis. The second stage is the active stage. The person may have delusions, hallucinations (either visual or auditory) and have a marked distortion in the way they think. This is the most frightful time for both the person suffering from schizophrenia and their family. The last stage the person will be listless and withdrawn and have trouble concentrating. It can present similar to the first stage. The stages may recur over and over in a persons life.
When people talk about schizophrenia there are two types of symptoms. Positive and negative. In this case it means what the disease adds and takes away. For example some positive symptoms would be: delusions (false beliefs) hallucinations (could hear, see, taste , smell or feel something that isn't there) disorganized thoughts, moods and behaviors. The negative symptoms would be: slowing of physical activity, reduced motivation, loss of interest in the feelings and lives of those around them, lack of concern for personal appearance. So the positive symptoms are the symptoms we see and are scared of and the negative symptoms are the ones we don't always see but are equally distressing.
There is no single cause for schizophrenia. There is definitely a genetic link, but they haven't determined exactly how that fits. There are things that can trigger psychosis - extreme stress and marijuana to name a couple. They have found that their is a much higher level of dopamine in a person's brain who has schizophrenia.
Treatment is usually done in a hospital as an in patient or an out-patient. Treatment usually consists of anti-psychotic drugs and psycho-social interventions. The anti-psychotic drugs help to control the amount of dopamine in the brain - but dopamine is the neurotransmitter responsible for our feeling good, so take it away and you don't feel so great any more. All of the anti-psychotic drugs have awful side affects. It's a matter of find the one that works with each person and the right balance to take away the positive symptoms without making the negative ones worse. All done by trial and error. While one drug may work well for one person - it may not work at all on another. One person may have terrible side-affects from one drug and another may not. It's totally hit and miss. And frustrating!
One book I have read said that 30% of people diagnosed with schizophrenia do very well - live relatively normal lives, have a job, relationships etc. Another 30% don't do so well - they may be able to live on their own, supported by disability or welfare and another 30% are those we see on the street. The last 10% commit suicide. At the beginning we were very hopeful that Kit would be in the top 30%. Now we are hoping for that but reality looks like it may be the second 30%. And that's okay. It beats the rest!
Almost Christmas
Well I left off my last post at just before Christmas 2008 and now we are at just before Christmas 2011. Things were better then than they are now...
After a few days in the adolescent ward three years ago and some heavy doses of anti-psychotics Dr. Teshima said he could be an outpatient and just participate in the day program. At this point Kit was quite scared of his diagnosis and wanted to comply to get better. After two weeks there he came home and we had a great Christmas with him in Toronto. Guelph University was amazing and they just erased his first term from their records so that he wouldn't have the marks from those courses reflected on his transcripts. Kit went back to Guelph part time taking three courses from January to April. He took the bus to Guelph every Monday morning, had a course on Monday afternoon, Tuesday morning and Wednesday morning. Then he came home every Wednesday evening. He took his meds. He was pretty happy. Things were going quite well. We all took a deep breath and thought he's going to be okay!
That summer we went to Africa with Kit and Robyn for three weeks. It was a fantastic trip, spent two weeks helping in an orphanage near Nairobi and then a few days on safari in the Masai Mara and then to Zanzibar to have a beach holiday. A few days in London on our way home finished off our trip. In London Kit showed some agitation, but we really thought it was due to the stress of travelling, but in hindsight he was probably off his meds at that point...
After the summer Kit transferred to Ryerson in September 2009 - taking about three courses. He was living at home but not doing super well. By Christmas we knew things were bad again and after a difficult Christmas in Vermont we came home and asked him to leave. He refused. Said he was fine - didn't want to go back to school, would get a job. Had not been taking his meds. So - we had the police come and remove him from the house. That was one of the hardest things we ever had to do. He was taken to CAMH where he was admitted on a Form 1, but couldn't keep him very long as he was not a danger to himself or others and two days later we dropped him at Covenant House as he did not want to go back on his meds. We had decided with advice from his psychiatrist that in order for us to support him at home he had to take his medication. So he stayed at Covenant house for five months, hung out on Yonge Street, spent time at the Yonge Street Mission's Evergreen on Yonge St. and continued to use street drugs to treat his symptoms. The worst mix you can have. By May 2010 he was in rough shape and he finally brought himself to St. Mikes hospital where we found him and brought him home.
He went back to see his psychiatrist - Dr. Lewis at Sunnybrook and started back on medication. This time they tried olanzapine and he seemed to get better quite quickly. He got a job at the local Valuemart working in dairy and spent the rest of his time hanging around the house. He joined Pure Fitness and was doing quite well. Had a great summer with us, Christmas, then a family trip on a cruise in March 2011. At some point around then he went off his meds again. Had a hard time going to work, was frustrated easily and then finally we had to ask him to leave again in May 2011. He moved down to Covenant House again where he stayed for about three months. He then started believing that he had some kind of sinus infection - that he was rotting from the inside out. He went to Mount Sinai, Toronto General, we took him to St. Mikes but there was nothing wrong with him. He was so distressed but absolutely believed something was wrong physically. He tried to aspirate this fluid from inside him with needles but that didn't work but Covenant House found the needles and kicked him out accusing him of having drug paraphernalia. He then moved into the YMCA house at Queen and Spadina where he spent the next three months. His typical day was get up, eat breakfast at the Y House then walk up to Ryerson where he could still use his student ID to get access to the internet. He would download movies or old TV shows and spend the day watching them. Lunch at Evergreen and then back to the Y House for dinner. Shower, sleep, repeat... He seemed to be coasting along at this level, functioning to a degree, but not well. Adam suggested that he move into his basement apartment which we thought would be worth a try. At first Kit said no, but then changed his mind. He would move in December 1st. Dave & I paid Adam rent for December and were pretty excited about this new brother relationship in the works. On November 30 we called Kit, no answer. No response from messages left at the Y. Same thing on December 1st. We were quite worried and those awful privacy laws make it impossible to get any information. Finally on December 2nd the Y told me after I begged them to let me know if he was okay that he had been there that night but had been very disruptive. I was relieved to know he was safe and thought he really didn't want to move in with Adam and he was avoiding us.
That afternoon - Kit called Adam, but he sounded different. Adam and Dave picked him up at Yonge and Gerrard and realized he was in bad shape. He was only rhyming words, kind of rapping and ranting but making little sense. They brought him to Sunnybrook Hospital on December 2 where they immediately put him under a Form 1. Seventy two hours in the hospital against your will. He spent two days in Emerg, in the same room as the first time and then went upstairs to the adult psych ward on Sunday afternoon. On Monday the doctors gave him a form 3 which is 14 days in hospital. They started him on anti-psychotics and gave him an injection as well. We want him to have bi-weekly injections so that we know he is actually taking his meds. After three years of being the pill police it's the only way. He finished up his two weeks on Monday and although he is less agitated and speaks properly now, he is still delusional. He truly believes he is in a virtual reality - part of a video game - like the Matrix. He was given a form 4, renewal of form 3 and is thirty days more. That's where we are now...
After a few days in the adolescent ward three years ago and some heavy doses of anti-psychotics Dr. Teshima said he could be an outpatient and just participate in the day program. At this point Kit was quite scared of his diagnosis and wanted to comply to get better. After two weeks there he came home and we had a great Christmas with him in Toronto. Guelph University was amazing and they just erased his first term from their records so that he wouldn't have the marks from those courses reflected on his transcripts. Kit went back to Guelph part time taking three courses from January to April. He took the bus to Guelph every Monday morning, had a course on Monday afternoon, Tuesday morning and Wednesday morning. Then he came home every Wednesday evening. He took his meds. He was pretty happy. Things were going quite well. We all took a deep breath and thought he's going to be okay!
That summer we went to Africa with Kit and Robyn for three weeks. It was a fantastic trip, spent two weeks helping in an orphanage near Nairobi and then a few days on safari in the Masai Mara and then to Zanzibar to have a beach holiday. A few days in London on our way home finished off our trip. In London Kit showed some agitation, but we really thought it was due to the stress of travelling, but in hindsight he was probably off his meds at that point...
After the summer Kit transferred to Ryerson in September 2009 - taking about three courses. He was living at home but not doing super well. By Christmas we knew things were bad again and after a difficult Christmas in Vermont we came home and asked him to leave. He refused. Said he was fine - didn't want to go back to school, would get a job. Had not been taking his meds. So - we had the police come and remove him from the house. That was one of the hardest things we ever had to do. He was taken to CAMH where he was admitted on a Form 1, but couldn't keep him very long as he was not a danger to himself or others and two days later we dropped him at Covenant House as he did not want to go back on his meds. We had decided with advice from his psychiatrist that in order for us to support him at home he had to take his medication. So he stayed at Covenant house for five months, hung out on Yonge Street, spent time at the Yonge Street Mission's Evergreen on Yonge St. and continued to use street drugs to treat his symptoms. The worst mix you can have. By May 2010 he was in rough shape and he finally brought himself to St. Mikes hospital where we found him and brought him home.
He went back to see his psychiatrist - Dr. Lewis at Sunnybrook and started back on medication. This time they tried olanzapine and he seemed to get better quite quickly. He got a job at the local Valuemart working in dairy and spent the rest of his time hanging around the house. He joined Pure Fitness and was doing quite well. Had a great summer with us, Christmas, then a family trip on a cruise in March 2011. At some point around then he went off his meds again. Had a hard time going to work, was frustrated easily and then finally we had to ask him to leave again in May 2011. He moved down to Covenant House again where he stayed for about three months. He then started believing that he had some kind of sinus infection - that he was rotting from the inside out. He went to Mount Sinai, Toronto General, we took him to St. Mikes but there was nothing wrong with him. He was so distressed but absolutely believed something was wrong physically. He tried to aspirate this fluid from inside him with needles but that didn't work but Covenant House found the needles and kicked him out accusing him of having drug paraphernalia. He then moved into the YMCA house at Queen and Spadina where he spent the next three months. His typical day was get up, eat breakfast at the Y House then walk up to Ryerson where he could still use his student ID to get access to the internet. He would download movies or old TV shows and spend the day watching them. Lunch at Evergreen and then back to the Y House for dinner. Shower, sleep, repeat... He seemed to be coasting along at this level, functioning to a degree, but not well. Adam suggested that he move into his basement apartment which we thought would be worth a try. At first Kit said no, but then changed his mind. He would move in December 1st. Dave & I paid Adam rent for December and were pretty excited about this new brother relationship in the works. On November 30 we called Kit, no answer. No response from messages left at the Y. Same thing on December 1st. We were quite worried and those awful privacy laws make it impossible to get any information. Finally on December 2nd the Y told me after I begged them to let me know if he was okay that he had been there that night but had been very disruptive. I was relieved to know he was safe and thought he really didn't want to move in with Adam and he was avoiding us.
That afternoon - Kit called Adam, but he sounded different. Adam and Dave picked him up at Yonge and Gerrard and realized he was in bad shape. He was only rhyming words, kind of rapping and ranting but making little sense. They brought him to Sunnybrook Hospital on December 2 where they immediately put him under a Form 1. Seventy two hours in the hospital against your will. He spent two days in Emerg, in the same room as the first time and then went upstairs to the adult psych ward on Sunday afternoon. On Monday the doctors gave him a form 3 which is 14 days in hospital. They started him on anti-psychotics and gave him an injection as well. We want him to have bi-weekly injections so that we know he is actually taking his meds. After three years of being the pill police it's the only way. He finished up his two weeks on Monday and although he is less agitated and speaks properly now, he is still delusional. He truly believes he is in a virtual reality - part of a video game - like the Matrix. He was given a form 4, renewal of form 3 and is thirty days more. That's where we are now...
Subscribe to:
Posts (Atom)